I forgot to update the spotfund page here are Stella's past updates. Follow her updates on facebook as well. Thank you for all of your support.
Update 12/7:
Yesterday, Stella got put on high flow oxygen with a regular cannula. She got her oral gavage (OG) tube taken out and got a nasal gavage (NG) tube put in. She is much happier!!! She had pulled her OG tube out 6 different times and needed it put back in, but an NG is more secure. She does have some skin irritation from her cpap mask and OG tube. She’s weaned down on meds twice since getting her cannula, and will wean again later tonight. She’s much more alert, and usually when she’s awake she’s content. Also, whenever she’s awake we get to hold her! Many more snuggles have been had, and it’s nice to feel a little more like she’s a healthy, normal baby. StellBelle started to work on oral feeding skills yesterday too, and had a great latch! Prayers for that process, and Daddy and Momma are both having skin irritation issues with the bleach used in the towels and bedding; prayers for that too. Thank you for all the support and love! Knowing our village is out there caring for us makes this whole thing a little easier.
The last few days have been slow, and slow is good. That means we know what's going on and can try and stay on track. Stella's FiO2 numbers have been at 21 for three days now. This is awesome, and the pressure to keep her airways open was around 14 at the last update. They dropped the number to 10 Sunday-Monday, got it down to 8 at 8 am yesterday, and dropped it to 7 at 9 am for 5-6 hours. Nate personally monitored Stella to see if they could drop it again to 5. Later, when he and the RN talked, they decided to go to 5. Everyone watched for 1 hour, and everything went well. They held Stella to see how she reacted and the numbers held strong.
Goals include:
Switching to the nose piece, AKA nasal cannula.
It’s been a whirlwind of a period until Monday-ish, when Stella sort of hit an expected plateau in her improvement. We’ve had a very hectic schedule with very little sleep (<<<prayers and good vibes to sleep well would be appreciated!)
By Sunday evening, doctors had removed the second UV line and her IV. Feeding and medications are gavage at this point. In the last 24 hours, Stella’s respiratory needs have been as follows: she’s been holding fairly steady at 21% FiO2, sometimes needing to go up to 23%. Her PEEP value (continuous positive air pressure) was dropped down to a 7 yesterday! When she reaches a 5 or 6, she will be moved from her current mask to a regular cannula. Stella has been experiencing intermittent tachypnea (fast breathing)- we were told this is usually one of the last symptoms to resolve. We are praying it ends soon as it isn’t good for her lung recovery.
Some respiratory goals we currently have are to minimize PEEP values and eliminate the tachypnea.
We have been able to hold her more and more (Daddy just got done rocking her and calming her down). Stella has been enjoying books and our daily story time. She always calms down, settles in, and has great numbers when Momma or Daddy are holding her. It’s been a rough and long road thus far, but seems to be becoming more straight and narrow (though we still have a journey ahead of us!)
ETA: she just got bumped down to a PEEP flow of 6! Had some med changes to make her more comfortable and less likely to have withdrawal symptoms.
Stella had a very restless night last night, and was wide awake (but content) from about 1a-5a. She then became very agitated. She’s now only on oral meds, and it’s a balancing act to get them to mimic her former, stronger IV meds. Nurses didn’t think she was having withdrawals from some of those IV meds which is great! She absolutely hates her current RAM CPAP mask and it doesn’t always keep a good seal to her face, making her need lots of extra care from nurses and respiratory therapists. After 9:30 rounds, we did finally today go up on meds and she’s been content this afternoon- even tolerated a hat check well at 2p. Momma got some kangaroo cuddles in, and will get more later with Daddy getting a turn too. Braylyn has loved being with us this weekend and getting to help with cares. Her favorite things are holding Stella’s pacifier and taking her temperature. We got to do some Christmas decorating- we’ll likely be here for quite some time, though our trajectory is uncertain. Stella’s case of meconium aspiration is/was extremely severe.
12/2/23
Overall, Things have been good. Today, we played with numbers and the amount of meds needed.
The goal is still to get the second AU line out and hold Stella easier for kangaroo care.
Stella is a fighter, and she sure likes to wiggle. They are currently playing with needing a mask again versus the tube in her nose because when she squirms, she moves her lines, not allowing the amount of oxygen she needs. Again, overall, it was a good day!
Michelle and Nathan face testing challenges daily and are trying to lean on the good things. Feel free to drop positive vibes here!
Today, in morning rounds, we chatted about last night's improvements. After talking, they decided to start lowering Stella's fluid because she is eating more now.
Goals: Remove the second AU line. Ideally, they want it out in the next 24 to 36 hours. This process has put Stella in an irritable state before—prayers for Stella to be comfortable while things change.
Doctors have also talked about Stella's respiratory needs. Her numbers were looking good this morning, and they want to take her off the CPAP and transition her to a different breathing piece/tube through her nose.
11/29/23 Update
Things went well yesterday. Doctors wanted to find out if Stella's oxygen and medications leveled out. Her SAT numbers are good, and her FiO2 numbers (amount of oxygen from the machine) are great. We Got Stella to 25. The average number is 21. The goal was to hold out through the night and see what came of everything.
Around 8 pm, Stella got permission to open her lid so she was no longer in a fully contained bed. Michell and Nathan had the opportunity to sleep in Stella's room all night. They were able to hear her cries and comfort her throughout the night. Mom and Dad woke up this morning in good spirits.
